posted
this is how the past few months have been for me lately.
I was treated orally, then IM with Claforan- still am and it is at a plateau so we are going for the PICC line. my brain is still so messed up, the orals helped a little, especially Ceftin,
but with my dh losing his job we need to get this line put in before our insurance runs out June 30th.
my oldest who is 9 has it as well and his protocol,is different than mine. I do herbals, roots, etc. and believe we need them to get and kill theses stealth infections.
but I am scared. I am usually good about going to appointments by myself out of state but this time with the additional stress, I am feeling very vulnerable.
and on top,of everything else going on, my Dad was not able to get his Medicaid paperwork together in time, so Grandpa Rudy, who is 84 yrs old is with us too. we love that seet precious and funny man, but he requires 24/7 work, insulin and meds, dressing, toileting, meals , and so on.
my husband has Lyme too, and isn't as sick as I am- and he has been such a Godsend and is helping so much with my Dad. I am privileged to see a side of him I didn't know was in there. God work's in mysterious ways!
but I don't know about you all but waking up is the most painful time for me. lower back, feet, bones, muscles, joints, head killing me, out of it, nightmares many nights...is this normal? herxing, needing to move on to a new med when PICC is put in, I know I have Babesia Duncani.
anyways, I am still currently IM twice a day Claforan and taking Flagyl,,which thankfully hasn't been a real hard one for me. I am taking 3 a day.
any medical thoughts? how do you manage sweating, getting your dressing a little wet and not getting it infected. and just call me the Oompa Loompa...It's ok.... really... how can I curb my appetite but I am not eating an enormous amount of food. anyways, I am discouraged, overweight, we don't have a job. but we do have our dogs- now I am sounding liking a "County song"... yeeee-hawwwww!
thank you in advance for medical tips on how to makemthenPICC line not hurt, what does my symptoms sound like, oh and my brain, memory, everything I feel it is just smooshed up in there (not sure if that is even a word). ugh!,
I got to get better for my family and need to help them with their battle against this disease and co- infections, and learn like crazy about MTHFR. Posts: 168 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I can't say much cause I'm exhausted but don't worry, if you have lyme and pain, the PICC is nothing compared to that. I don't even know mines in.
Keep it flushed and clean. Infuserve has great flushes for cheap that have caps for your lumen to keep it clean. They will drastically reduce the chance of infection.
Don't worry, it's easy.
Also sounds like bartonella btw. Most good docs just assume that these two are there even if you have neg tests.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If you have never had a PICC before, be sure the order to install is followed by an order to teach you how to change dressing, etc. and infuse. Install probably one place, with home health nurse doing the other parts at your house. Be sure to find out how you will get the first infusions and supplies so they will be on hand for the nurse. And get the first month drug and supplies, nursing care covered by your insurance before you lose it. That means you should jump on this quickly before the deadline.
Posts: 2888 | From USA | Registered: Mar 2004
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Did the PICC line really make a difference? and would the meds used in the PICC line cover Bartonella?
can Bart get in the brain too, babesia?
I keep getting different reports through emails that if I end up getting supplemental insurance, that I should wait until,after summer, and try the other Orval's I haven't tried yet for Babesia, etc. and then do the PICC as a last resort.
they say that since summer is coming sweating, having two,active boys who will be swimming- they thought it just might be too risky for getting the dressing wet, sweaty, and infection can set in quickly.
so, I was curious about your thinking. we are checking out insurance prices now. if we can get good coverage after our current insurance runs out, would you recommend I wait?
and continue with IM injections along with cyst busters etc, and then when LLMD says to then hit the Babesia. I am taking Flagyl...I think it helps with Babesia but not sure what helps for Bartonella.
thank you in advance for your thoughts!
Posts: 168 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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droid I hope you get to feeling much better. thank you for your words when you were so exhausted. I know how hard that is and appreciate it very much.
and poppy thank you for letting me know how important getting to know how to do everything is. I will make sure that happens because I can see how confusing or what steps need to be taken when and to keep everything sterile.
Posts: 168 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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posted
I've had my PICC 9 months and counting.......
Sweating is tricky. It's not as hot here as TN, but I had to shovel snow all winter. Shoveling is hard work. Especially when it's wet and heavy. And exhausting. Sweat not only breaks the seal of the PICC dressing, but sweat forming inside the dressing is a breeding ground for bacteria.
I had a nurse coming weekly to change my dressing for the first four months. She had to come back mid-week a couple of times to replace a damaged dressing. It was unavoidable. If you can avoid strenuous activity do whatever it takes to protect your dressing.
I lost my insurance....and my nurse. I couldn't afford it. Luckily my neighbor is a nurse and offered to do my dressing changes (she's been a godsend). My LLMD sells me PICC supplies so I made sure to buy a couple of extras for those weeks that need a second dressing change.
Now summer's here and I'm finding just sitting on the porch makes me sweat. It's frustrating. My son just learned to ride a bike so I'm trying my best to ride with him and we even went fishing, but I'm limited by what makes me sweat. My car's AC doesn't work either. Ugh.
Showering. I tried the DryPro cover and a thinner one I bought at the drug store but had trouble with them. So now I shower with my arm straight up in the air and just be careful.
To help keep the dressing from coming loose, I found putting thin strips of Mefix Self Adhesive Fabric Tape (I order it online, haven't seen it at drug stores) along the edge of my dressing. It helps keep it from coming loose. I'm taping the PICC dressing to my arm so it's providing a little extra support. They use Mefix in hospitals. It's only about $5 for 11 yards. I buy boxes that are 2" wide x 11 yards long.
Mefix tape is awesome. It doesn't hurt your skin but sticks tight and comes off easily. I also use it to tape down my PICC extension so I'm ripping it off twice a day and doesn't irritate my skin. It stands up well to moisture, such as humidity in the shower. While it's easy to pull it off the skin, it holds tight to the PICC dressing.
You may find the adhesive on the PICC dressing irritates your skin. It gave me a rash and was itchy as heck for the first week. So the nurse started prepping the area with Iodine swabs, then applying Skin Barrier wipes before applying the new dressing. The iodine stopped the itching, and as the name implies the Skin Barrier wipes create a thin barrier between your skin and dressing.....as it dries it's kind of sticky.
It's trial and error to find what works best. That's what I learned over the last 9 months, I hope it helps make it easier for you. Good luck, I hope your whole family gets better soon.
Posts: 99 | From Cali | Registered: Dec 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Thin arm length plastic gloves are available in a pack from Tractor Supply store. They are actually meant for use by people who have to stick their arms inside animals.
Add some stretchy tape around the top to hold in place, like the kind they use to hold on cotton ball after needle stick.
Works well in showers. I still hold my arm out to the side and up to be extra careful.
Posts: 2888 | From USA | Registered: Mar 2004
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I have a PICC-no big deal. For showering- I cover it with a cut up sock (found some tube socks at the dollar store which work great) then cover the whole thing with glad press and seal. The tube sock prevents the press and seal from sticking to my PICC extension.
Posts: 1276 | From maryland | Registered: Jan 2009
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My PICC line insertion went beautifully. The radiologist had a warm bedside manner but was very professional and focused (thank our good Lord).
It seemed that by the time they started the procedure, it was over in like 7 minutes. I was so happy and relieved. I just felt a needle stick and some minor stinging...not a big deal at all.
this radiologist knew what he was doing. I was so happy it went so well. You know how we can get use to or expect things not going well, ...well this was a welcomed unexpected surprise.
I have Tegaderm over my line. There is a little white circle called "biopatch" that has a slit in it and acts as an additional barrier of protection and it has some kind of antibiotic in it and goes right around my line, right where it enters my skin.
Then they have my line locked into a "stat lock", which is great because it keeps my line from being pulled. And with two kids, an array of four legged family members, and a Grandpa...I am so thankful for whoever invented it.
SouthPaw, I feel for you as you were describing going on a bike ride with your son. And I am sorry about you losing your insurance. But like you said, thank God for your neighbor.
Thank you all again for your feedback. I sure hope I can keep my PICC line in for a long time with no complications.
I hope you all are having more good days than bad. thank you again.
Posts: 168 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Annisa, best of luck to you with your Picc line. So glad that things went well for you. Please keep us posted on how you are doing with it.
Posts: 2387 | From New England | Registered: Aug 2011
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